Much needed. After a failed attempt to change it at home with my mom’s help, I went ahead and got it changed by a nurse in the radiology department at Enloe on Tuesday. I thought I’d be able to do that at the radiologist’s office, but they sent me in to have it done by a nurse at the hospital. (A brightness in all this sickness: the medical personnel I’ve dealt with have been fantastic in so many ways. More on that another time.) The nurse managed to remove the remnants of the old dressing from the tube, though he had to use a scalpel. No wonder my mom and I struggled!
I like the new set up. It feels more secure than the old one and I notice the dressing less. The last thing I want is for the tube to come out accidentally. (Mainly because the real last thing I want is to have to go through the insertion process again. Or to get sicker.)
At this point, you might be wondering – or have resorted to Googling – what an NJ tube is. A nasojejunal snakes through one’s nose, down the esophagus, beyond the stomach and through the first part of the small intestine (duodenum) to land in the second part (the jejunum.)
I get fed for twelve hours per day, mostly overnight, via my NJ tube. I have a prescription for a special formula (Jevity) that provides me with necessary protein, carbs, vitamins, pre-biotics, and, most of all, calories. The tube goes into my jejunum, rather than stopping at the stomach like the more common nasogastric (NG) tubes because my problem isn’t with eating, but rather with keeping food down. I’m still eating as much as I can in addition to the tube feeding, but the tube provides a supplement and back up. There are great days, like Tuesday, when I get in three meals and some snacks. There are also days like Monday when I keep in some lime jello and a single cracker. Or less. The tube helps.
I’ve had the tube for a little over a week now and it’s been a trying process.
To begin, it hurts. A lot, at first. Maybe I’ve become a wimp, but the physical pain from the tube had me in tears on my second and third days with it. My sore throat was worse than the pain from having my wisdom teeth out, for comparison. I do think this was a slightly abnormal experience for a few reasons. First, the insertion process was pretty difficult – it took the intervention radiologist longer than he said to expect – and that involved a lot of scraping in and out. Second, there have been awful fires nearby and the air is smoky, especially in Paradise, the town where I had the tube put in and met with a dietitian. Third, I’ve been dealing with a sore throat anyway, as part of my lovely condition.
It can also hurt to feed, depending on how it’s done. The first night, before we got the pump, we attempted to push in Ensure with the help of a home health nurse. That’s fine for NG tubes, from what I understand, since it’s just like drinking eight ounces, but it’s awful for NJ. My lay understanding of the matter is that your small intestine usually only receives foods a little bit at a time and when it gets more, it starts singing about revolution. Or at least mine did – dizziness, cramps, diarrhea, vomiting, all that good stuff – and I’ve heard it was a pretty typical experience. The pump feed goes considerably more slowly, and we’re inching it up day by day “as tolerated,” but sometimes my body forgets its Montessori raising and grows intolerant. The last couple of days we haven’t been able to raise the feed, unfortunately.
But there’s a less physical kind of discomfort that’s no less real. I hadn’t expected it, much like I hadn’t expected it to hurt like it did. The reality is that I have a tube sprouting form my nose and tape holding it in place. Everyone can see that and an awful lot look.
I know it’s not the same, but this tube has given me a tiny glimpse into the lives of those with visible disabilities.
Children stare. They often look worried. Babies stare less, other than in their usual way. I don’t think this is just self-consciousness on my part, since I’ve noticed a distinct difference between adults and children.
Adults smile at you more. Strangers can be suddenly very nice. Most, I think, kind of ignore it.
Visibility takes away your choice. You can’t just opt for medical privacy. If you run into someone you haven’t seen for a while and he or she asks how you are, you can’t just say “fine, thanks.” You have to tell the whole story. Having the tube forces me to come out.
In medical settings, even casual contacts know, or assume, that you’re the sick one, despite being young and otherwise fairly healthy looking.
Of course, I also know that it’s temporary. It’s a matter of a month or two, hopefully. The relief on knowing that is immense, especially in the face of the pain. People won’t see me this way forever and I’ll get my choice back. Some people don’t have luxury.
Still, having this tube has made me think.